Cancer research relies upon the participation of people like you! Sometimes this entails answering surveys, being interviewed, or engaging in focus groups. Other times it may involve an active role in the design of research questions, study information, or research design. We are proud to support projects that are different, innovative, and have real benefits for cancer patients and their loved ones around the world, by assisting researchers in recruiting participants to get involved in cancer research.
Here are the details for some current opportunities to get involved in research
Assessing sleep disruptions, fatigue and mood disturbances in people affected by breast cancer
Who is organising the research?
- Dr Leanne Fleming, Dr Amanda Diserholt, Dr Nicola Peddie, the University of Strathclyde
What is the purpose of the study?
Mental health difficulties are a large public health concern across the world, and particularly for the breast cancer population who typically show higher rates than the general population. Sleep disruptions, fatigue and mood disturbances (such as anxiety and depression) are particularly common. However, we do not have good evidence of how widespread these symptoms are in those affected by breast cancer, and furthermore, an understanding of what the relationship between them may be. The aim of this research study is therefore to find this out. The results of this study would highlight the needs of people affected by breast cancer and inform the direction of future research and interventions, with the aim of minimising side-effects of diagnosis and treatment and improving quality of life.
Who can take part?
Anyone can take part who is 18 years or older, lives in the UK and has been diagnosed with breast cancer (at any point).
What does taking part involve?
Completing an online survey which takes around 10 minutes.
How can you get involved?
By clicking here, which will firstly take you to the Participant Information Sheet and then on to the survey
Online Survey - Thinking about a fear of cancer recurrence and illness perceptions, as well as mental health in young people who have survived cancer.
Who is organising the research?
- Michael Horwood (Trainee Clinical Psychologist) at The University of Bath.
What is the purpose of the study?
Many people who have survived cancer can experience a fear that it will return, which we call ‘fear of cancer recurrence’. Previous studies have found that in both adults and children, fear of cancer recurrence can get in the way of their general lives and is related to their mental health. However, we don’t yet know very much about fear of cancer recurrence in teenage and young adult cancer survivors.
We want to understand more about fear of cancer recurrence in young people who have survived cancer. We think that fear of cancer recurrence might be connected to illness perceptions (i.e. how we think about our illness) and to mood. To investigate this, we are asking young people, age 16-24, who have survived cancer to fill in questionnaires. These measure fear of cancer recurrence, illness perceptions, mood, quality of life, fatigue and general functioning.
Who can take part?
- People aged 16-24 years old.
- Who are in remission from your cancer and have completed active cancer treatment.
- Who received treatments for your cancer between the ages of 13-24.
What does taking part involve?
- If you decide to take part, you will be asked to fill in a consent form, a demographic questionnaire, a clinical information questionnaire and the seven questionnaires online. This should take between 20-30 minutes.
- Once you have finished the questionnaires online, that is all you need to do.
- On completion, you can choose to be entered into a prize draw with the chance to win 1 of 5 £20 amazon vouchers.
How can you get involved?
Please click here but if you want to find out more about taking part in the research, you can contact the researcher at FCRresearch@bath.ac.uk.
Breast Cancer Surgery Priority Setting Partnership
Who is organising the research?
What is the purpose of the study?
These organisations are working together to establish a Priority Setting Partnership (PSP) to identify and prioritise uncertainties about a particular condition or treatment that are agreed to be the most important “unanswered questions” in the specialty, and the aim of this is to ensure that the bodies who fund health research are aware of the questions that are felt to really matter to both patients and clinicians. Answering these questions through research could help with the progression of medical knowledge and benefit patients.
Who can take part?
The partnership would like to encourage health professionals and people affected by breast cancer to submit research questions they feel should be prioritised.
How can you get involved?
EORTC Patient Network recruitment.
The European Organisation for Research and Treatment of Cancer (EORTC) are always looking to increase their patient networks. If you are interested in any of the following opportunities, please email iryna.shakhnenko@eortc.org or follow the links to the application forms.
- Involvement in tumor group activities:
EORTC clinical research activities are conducted through disease-oriented groups. Some groups already involve patient representatives, others not yet. EORTC are developing a new patient involvement strategy in order harmonize the process and make it more consistent. They are looking for experienced patient representatives who would bring their perspectives to the trials and research projects conducted by the groups. This may involve, among other things, co-design of study protocols and patient information sheets, participation to group meetings, data and safety monitoring, fundraising, and co-creation of lay summaries.
- Patient panel
There is also an opportunity to join the EORTC patient panel. At the moment this is composed of 8 members, who are independent patient advocates, patients and caregivers.
- Membership in the Independent Data Monitoring Committee (IDMC)
The IDMC is an independent body composed of several clinical doctors and a statistician whose aim is to evaluate the accumulating data during the course of clinical trials. It would be invaluable to have a patient on board, to help us understand whether:
- scientific value of the trial is sufficient,
- participation to the trial is feasible for patients,
- investigated therapy brings important (positive or negative) changes for patients (risks vs benefits).
Applicants should have an understanding of clinical trials and be interested in learning more about data safety. Statistics training would be provided, and you can apply here.
- Reviews of patient information sheet and study concept:
For each study, we ask patient experts to provide their feedback on the above mentioned documents.
Normally, you will get 2 weeks for review.
The frequency of contacts: approx. 1-2 times in three months, and you don’t need to participate every time. If you would like to get involved, you can complete this form (takes max. 5 min).
A study of people’s experiences of using therapy practitioners’ services of the Aneurin Bevan University Health Board
Who is organising the research?
Sara Pocknell, Occupational Therapist/PhD student at Cardiff University, School of Healthcare Sciences.
Funding provided by KESS2.
What is the research about?
This study is looking at what, when, where and how people who have had cancer access therapy practitioner services. And how they use them after their discharge from hospital. There are many cancer services that are available to people who have or had cancer. But there is not a current clear pathway for people to access them.
In this study the researcher wants to:
- understand people’s experiences of using the services of a therapy practitioner such as:
- Occupational Therapist – someone who helps people develop skills needed for activities of daily living, including self-care, leisure, independent living and work.
- Physiotherapist – someone who helps with body movement exercise and stamina.
- Speech and Language Therapist – someone who provides treatment, support and care for people who have difficulties with communication, or with eating, drinking and swallowing.
- Psychologist – someone who helps with emotions, thoughts, feelings and behaviour and how different situations, such as illness, can affect people differently.
- Podiatrist – someone who provides treatment and support for people who have problems with their feet, ankles or lower leg that affect walking.
- Orthotist – someone who provides medical devices such as splints to support movement.
- Dietician – someone who provides advice about diet and nutrition.
- identify what is good practice for these therapy practitioners
- identify possible improvements to accessing these services
Who can take part?
You may be able to join this study if you live in the Aneurin Bevan University Health Board area and you:
- had cancer care in the past 4 years
- have been discharged from the cancer services at least 2 years ago
- are at least 18 years old
You cannot join this study if you are having palliative care or end-of-life care.
What does taking part involve?
The researcher will interview you. They will arrange the interview at a place and time that is convenient for you. Or if you prefer they can arrange an online interview. The interview will take between 1 and 2 hours. The researcher will ask your permission to record the interview.
The questions are about your experiences of the cancer services you have used and the cancer care you had. Talking about and sharing your experiences might be emotional and overwhelming. It might remind you of times that were distressing or difficult. However, you can ask to stop the interview at any time or ask to withdraw from the study. At the end of the interview the researcher will give you a debrief sheet. This has a list of people and organisations you can contact should you want to talk to someone. There is a £10.00 Amazon voucher available for taking part.
How can you get involved?
In the first instance please contact the researcher at pocknellsj@cardiff.ac.uk so that they can send full participant information.
Capturing Compassionate Care Research Study (The CCARE Study)
Who is organising the research?
Ellen Huish at the University of Bath
What is the research about?
Compassionate care is really important, so there is a need to capture patient experiences to check that the care they received was compassionate. The Compassionate Care Measure (CCM) is a new questionnaire that aims to measure these experiences. It asks patients to think of one contact they had with a healthcare professional in the past month and to rate how much they agree with a series of statements about the care they received. This project aims to check that this measure is of good enough quality to be used to improve services and patient care.
Who can take part?
People aged 18 or over who have attended a healthcare appointment within the past month can take part in the research. The appointment could have been face to face, or by phone or video call.
What does taking part involve?
Taking part in the research would involve 10-15 minutes of your time to complete an online questionnaire here.
If you provide your email address and agree to be contacted again to complete a shorter questionnaire you will automatically be entered into a prize draw to win an Amazon voucher worth £25.
How can you get involved?
If you would like to get involved with this research project please click on the above link to view the online questionnaire.
If you have any questions or would like to be posted a paper version of the questionnaire please contact Ellen Huish on eh301@bath.ac.uk or 07815 657139.
If you have any concerns related to your participation in this study please direct them to the Department of Psychology Research Ethics Committee, via email: psychology-ethics@bath.ac.uk.
The impact of bowel cancer on sexuality and intimacy: The experiences of sexual minority men.
Who is organising the research?
Hannah Ward at the University of East London
What is the research about?
Bowel cancer and its treatment can significantly impact on a person’s sexuality and intimacy, resulting in considerable changes to sexual function, relationships, and self-esteem. People from sexual minorities often have to contend with these changes whilst navigating healthcare settings which are centred around heteronormative principles and practices, resulting in difficulties receiving relevant support and advice. The research project aims to explore how men who have sex with men experience their sexuality and intimacy in the context of bowel cancer. Themes from the study can be used to inform healthcare professionals about the ways sexual minority men navigate their sexual and intimate relationships post-cancer, to ensure the advice they provide is relevant and meeting their needs.
Who can take part?
Males over the age of 18 years old who self-identify as men who have sex with men can take part. They must have received a diagnosis of bowel/colorectal cancer. They must be in remission and have completed any treatments at least six months prior to taking part. The study is excluding those who have a permanent ostomy as a result of their cancer treatment, but will include those who had temporary or no ostomies.
What does taking part involve?
Taking part in the research would involve a one-to-one interview with Hannah Ward, the lead researcher. Interviews will take up to one hour and take place over Microsoft Teams video call or by telephone. During the interview, participants will be asked about their experiences of having bowel cancer and the impact it has had on their sexuality and relationships. The interview should be like having an informal chat and participants will be free to share as much or as little about their experiences as they feel comfortable. Everything discussed will be kept anonymous and confidential.
Participants will be offered a £10 Amazon voucher as a token of appreciation for taking part.
How can you get involved?
If you are interested in taking part or if you have any questions, please email Hannah Ward at u1945541@uel.ac.uk.
Exploring the long-term psychological needs of men with prostate cancer
Who is organising the research?
Jennifer Kirby (clinical psychology doctoral student), University of Leeds School of Medicine.
What is the research about?
This study is exploring the long-term psychological needs of people with prostate cancer to understand the impact that experiencing prostate cancer can have on quality of life. We hope to raise awareness and contribute to scientific understanding of the psychological needs of people who have experience of prostate cancer in the UK. Doing so can help us to identify factors which increase vulnerability to poorer wellbeing and quality of life post treatment, as well as ways to reduce the impact of the long-term consequences of prostate cancer on everyday life and wellbeing.
Who can take part?
You can take part if you are:
- Over the age of 18
- Have previously had a diagnosis of prostate cancer
- The time since diagnosis is 12 months or more
What does taking part involve?
If you agree to take part you will be asked to complete an online survey. The survey involves a series of questionnaires that will ask you a little about who you are, and about quality of life, mood, body image, masculinity and your perception of prostate cancer. This survey will take approximately 20-30 minutes to complete.
How can you get involved?
Access to the survey can be found here.
Other opportunities will be added all the time so please keep a look out here and on our social media for other ways you might be able to get involved.
